Institutions and the shaping of stories
In talking about caregiving and the sharing of stories, another discussion began to bloom in my comments section.
What does it look like when our stories deeply belong to us? What if our stories aren’t co-opted by others but by institutions and greater societal narratives?
I found myself in a situation recently where, with my shaking voice I told my truth, and it wasn’t absorbed kindly. Which I knew would happen. But what I didn’t expect were the messages I got after of people saying “I think the same thing, but I could never say that out loud. Watching what happened to you reiterated that for me, that there are consequences for speaking up.”
I’ve journaled through this thought a number of times, and it ties into this idea that unless a lion picks up a pen, each narrative will glorify the hunter. I’ve turned this over from every angle in my experiences as a chronically ill woman. For so long, our voices were silenced, and they still are in so many ways. When I speak my truth in a way that feels authentic to me, I am reacted to by hundreds of years of an institution that upheld specific narratives over patient voices. If my story cannot fit neatly into the story that is being pushed by the mainstream world (and there are very specific roles for chronically ill women existing in the world, which include the inspirational illness porn trope, a plot device to further the main narrative and the before/after) I am useless.
In this retelling, my story belongs to those who care for me, to the institutions and systems that I participate in, in the cultural ableism that exists, but never to me.
What might it look like if we reclaimed our narratives? I don’t think we’re ready for that conversation yet.
As I’ve walked through this chronic illness world (and I’m sure this exists in other spaces too, but I’ll just speak to what I know) many of us are content to uphold the narratives we’ve been given, not rock the boat and just get by. It takes immense energy to do otherwise, which quite often is energy we don’t have. When we’ve existed inside these narratives for so long, sometimes that becomes the only accessible reality. And when you begin to explore the boundaries of your box, there are so many people eager to push you back in it.
I heard recently someone say that in this age of constant information, propaganda and social media hot takes, do we not know who we are or have we just lost experience?
I gave so much of who I was to the medical system in an attempt to get by and survive, and in exchange they told me how to think, what stories to lift up, which headlines to parrot. And in my post transplant healing, as I’ve explored the edges of this box enough to know I’m not comfortable inside of it, I’ve worked to reclaim myself as a person and my narrative.
The medical system doesn’t just treat bodies, it shapes narratives.
I’m not here to debate if that is intentional or not, or how this pervasive co-opting of stories trickles through individuals and erodes what previously existed.
I am here to reclaim my own story. To value my own embodied experience over arbitrary data and information. This reclamation will look different for everyone who tries it on. Our stories, when we tell them, in our voices, will all sound different. My truth might not be for everybody, and that’s ok. It is for me.
This is how we create narratives that move away from glorifying the hunter.
